Canada: Mark your calendars!

In the Mitochondrial Disease Awareness Week MitoCanada has planned a number of exciting fundraising and awareness activities. There truly is something for everyone; MitoCanada invites you to join along!

The funds raised with these activities will support transformational research and MitoCanada's advocacy efforts.

Joining is easy. Simply browse through the evens and select one or two that best suits you. You can also create your own mito awareness event and MitoCanada will help you get started. 

Inspired? Go the website here here

Global Mitochondrial Disease Awareness Week

Around the world Global Mitochondrial Disease Awareness Week is marked with educational, fundraising and advocacy efforts designed to raise awareness about mitochondrial disease (Mito). Every year IMP members around the world are working together to raise awareness for mitochondrial disorders, by setting up special events that week to raise awareness. For additional information and to get involved you can take a look at our special website or on the special Facebook page The GMDAW website will also inform you about any national events taking place in your country.

Light Up for Mito 


Light Up for Mito is a global campaign hosted by International Mito Patients (IMP) involving illuminating landmarks in green to raise awareness of mitochondrial disease (Mito). This year on 22 September 2018, IMP members are collaborating to light up landmarks around the world. 

How you can get involved:

Help us break the world record! You can help us make Light Up for Mito even bigger this year by organising a monument to be lit up green in your area. Please contact This email address is being protected from spambots. You need JavaScript enabled to view it. to get involved

Install a green light bulb in your porch or outside your home or office and light up for mito. Share a photo on social media using #lightupformito or email This email address is being protected from spambots. You need JavaScript enabled to view it. to have your photo included on the website

Change your profile picture on your social media accounts to the green mito ribbon to help raise awareness

Senate Committee recommends laws change so Australian babies don’t suffer mitochondrial disease

Australian women at risk of having babies suffering severe mitochondrial disease may soon be able to have healthy children, following last night’s Senate Community Affairs References Committee recommendation to move towards legalising mitochondrial donation, a ground-breaking IVF technique that replaces energy-generating DNA in the mother’s egg with donor material.

The Committee’s report has been welcomed by the Australian Mitochondrial Disease Foundation (AMDF), the peak body supporting Australians with mitochondrial disease, a serious and potentially fatal genetic disorder that starves the body’s major organs of energy.

AMDF Chairman Dr Doug Lingard thanked the Senators for their hard work inquiring into mitochondrial donation, and called on the Australian Government to act on the Committee’s recommendations as soon as possible.

“At least 60 Australian babies each year could be prevented from suffering severely disabling and potentially fatal forms of mitochondrial disease if mitochondrial donation was available here. It offers the first practical hope for future generations to live free of maternally inherited mitochondrial disease,” Dr Lingard said.

“In the AMDF’s experience engaging with the Australian public, politicians and other stakeholders, including a Citizens’ Jury in 2017, mitochondrial donation receives overwhelming support when people understand the procedure and its ramifications.”

“By acting promptly to change our laws, Australia could become the second country in the world to establish a regulated system to provide mitochondrial donation to families affected by this devastating disease,” Dr Lingard said.

“After ten years of scientific research, ethical review and consultation, in 2015 the UK made pioneering legislative changes to allow mitochondrial donation; these were endorsed in 2016 by the Human Fertilisation and Embryology Authority, and the first clinic and patient licences were issued in 2017.

“The Committee clearly recognises that the UK’s strict regulatory system for mitochondrial donation provides a sound basis for Australia, with only minor changes likely to be required to reflect our local context.

“The AMDF supports the pathway towards legislation recommended by the Committee.

“We stand ready to help in the public consultation process and urge the Australian Government to seek the advice of the National Health and Medical Research Council as soon as possible,” Dr Lingard said.



Mitochondrial donation involves replacing the faulty mitochondrial DNA in the mother’s egg (0.1% of its genetic material) with healthy donor mitochondrial DNA so the resulting baby will not suffer mitochondrial disease.

The mother’s and father’s nuclear DNA contributes more than 20,000 genes or 99.9 per cent of the baby’s genetic make-up and determines its appearance, intelligence, behaviour and other personal characteristics. The 0.1 per cent contribution (37 genes) from the donor egg means the resulting baby’s cells can effectively convert food and oxygen into the energy needed to power its organs.

Depending on which parts of their bodies are most affected and to what extent, people with mitochondrial disease can lose their sight or hearing, be unable to walk, eat or talk normally, have strokes or seizures, develop liver disease or diabetes, suffer cardiac, respiratory or digestive problems, or experience developmental delays or intellectual disability.


For interviews with the AMDF, experts and affected families, please contact:

Carol Moore, Moore Public Relations

02 9560 2826, 0402 382 363, This email address is being protected from spambots. You need JavaScript enabled to view it.  


For further media information:

·         AMDF Media Resources Dropbox:

·         Senate Standing Committee on Community Affairs Science of mitochondrial donation and related matters

·         Scimex Expert Background Briefing:  

           A recording of the 15 June briefing is in the Attachments at the bottom of the page, featuring:

-       Professor Carolyn Sue: Professor and Director of Mitochondrial Research, Royal North Shore Hospital, Kolling Institute, University of Sydney; Founding Director, Australian Mitochondrial Disease Foundation; Co-Chair, AMDF Scientific & Medical Advisory Panel.

-       Professor David Thorburn: Head, Mitochondrial Research Group, Murdoch Childrens Research Institute; Co-Chair, AMDF Scientific & Medical Advisory Panel

-       Dr Ainsley Newson: Associate Professor of Bioethics and Deputy Director, Sydney Health Ethics, The University of Sydney




Within the Wellcome Centre for Mitochondrial research at Newcastle University we are always searching for new and innovative ways to improve the lives of patients with mitochondrial disease. These innovations can take various forms, such as the development of new technologies  and finding new ways to connect and engage.


In the past we have found that the best ideas often come from people with direct personal experience of mitochondrial disease. To this end, we came up with the idea of holding meetings involving patients, researchers and technology designers to come up with ideas. Working with Open lab, also based at Newcastle University, and patient groups, we put together the  MYTO design events.


The MYTO events were a series of design events held in the UK, Netherlands and Italy in March and April 2018 bringing together people living with mitochondrial disease, technology designers and researchers. These events resulted in the generation of new ideas to help patients with mitochondrial disease. To view or comment on ideas please see the event webpage at alternatively please follow us on twitter at @designingmyto


The success of this project was dependent on the co-operation and help of mitochondrial patient organisations, including the International Mitochondrial Patient (IMP) organisation, The Lily Foundation (UK), Spierziekten Nederland (NL), VKS (NL) and Mitocon (IT), who helped us to organise and run the MyTo events across Europe. We would like to say a huge thank you to all the patient organisations and the patients who gave up their time to help make this event a success.


Thank You!




Watch and share this amazing video of Talia and her inspiring parents! The whole world should know her!


© 2019 Int. Mito Patients